24 Hour EEG

Friday, we headed down to Primary Children's for Abigayle's "BIG" 24 hour Video EEG. The nurses were quick with getting the electrodes placed & having her head wrapped so we could get going with the testing. Abi cooperated really well, & we were able to catch all 4 different types of seizures (I think). I was a bit surprised at how many seizures Abi had while we were down there. When she would have a seizure we would push a button and then write down the date, time started & time ended of the seizures. Also we had to describe what her seizures looked like. She had a total of 6 seizures during her testing that we seen or caught. (She could have easily had more during the night or ones that were absent & we didn't notice.) If you count how many she had Friday morning before the test, & then the time she spent testing, along with Saturday after the test, Abi had a whopping 10 seizures!!! I am shocked! I have not seen Abi have over 3 seizure a day in such a long time. And for her to be totaling 5 a day, is frustrating. Today I have not seen her have a single one. It would be nice for her to be seizure free! One day that will happen! We will get the results from Dr. L by the end of the week. Hopefully by then, we can figure out what is going on in her little head & somehow find the medication to help stop the seizures. We took quite a few pictures of our long & eventful days spent down at Primary Children's. (Really it was boring.) But we are glad that Abi cooperated & had a successful testing experience!

Photo and video editing at www.OneTrueMedia.com

***Abi just started to do this with her tongue. She watches us do it, & then she does it. It's so fun to watch her do these silly things. She also started giving kisses this week!***

What's going on with Abi?

As some of you have asked...how is Abigayle doing? I thought it was time to post a little update on her. Things with Abi have definitely been exciting & frustrating. To start out, Dr. L had increased Abi's dose some more about a month ago, because she was still having 1 seizure a day. The increased dose seemed to help & Abi was seizure free for 5 DAYS!!! She then had gone back to having 1 a day, and we increased her dose again. Again, it helped & she went 3 days without having a seizure. The seizures came back 2 Sundays ago, and have increased in number from 1 to about 2-3 a day. I am a bit frustrated to see her have more than 1 seizure a day. It seemed like things were going good when we were down to 1. With her seizures coming back & increasing by number so are different types of seizures. The type of seizure Abi has is called {Partial Complex Seizures}. So on top of those I feel like she is having Absent seizures, which the only way I can tell is her breathing gets heavy & she has a blank look about her. She also is having a seizure that her left eye will slowly close and sometimes she does not respond but other times, she responds. I feel like these are her old Infantile Spasms that have come back.... YUCK!!! It makes me sick to think about. Most of the time she doesn't act bothered, but there are the few times she is. After she has a seizure, she is of coarse exhausted & falls asleep for about an hour or so. She also has had a few where her eyes will bounce... I call them her "crazy eyes". She's only had 2 or 3 of those. I get so bummed out when I see her have a seizure, but when I see a new one on top of the regular seizure she has, then I find myself depressed and scared for the unknown. This past week Abi has been sick with a horrible cold. I did not know your nose could produce that much snot. Poor Abi has such a raw nose now & is still trying to get rid of the cold. On Wednesday, Abi's worst day, she ran a low grade fever & had 2 REALLY strong seizures. This seizure was the kind where her whole body shook & her eyes rolled in the back of her head. We have never seen her have this type & so, to see it, Dave & I were a bit shaken up. She seized for about 1-2 minutes & then took about 30 seconds for her to come to, when she came to, she acted like nothing happened. But then 30 seconds later, she went back into another seizure. I immediately called her Neurologist, & was told that being sick & running a fever can definitely bring on seizures. We are hoping that those seizures will NEVER come back. Abi is still sick, & I am afraid she might have strep throat. Lyvie is just getting over strep, so it wouldn't surprise me if she caught it. So, I will call the Dr. tomorrow & hopefully get her on an antibiotic.
On a happier note. Abi can sit on her own. Dave & I no longer hover her when she is sitting. We can leave the room, & come back to find her in the same position! And, this past Tuesday, I was in my bathroom doing my hair, while Abi was laying on the bedroom floor, I heard her grunt. So I looked down, & she had rolled to her belly! Great Job Abi!!! She has rolled a few times now & each time I see her do it, I can't help but smile! She is slowly rolling, but with each day, she'll get better & faster at it. Her Physical Therapist came this past week and complimented on how much stronger she is. Her legs are so strong, & she seems to enjoy being on her feet. She also is rolling to her side & reaching for toys. And, bringing BOTH hands together. These things may be little for some, but to us, they are huge milestones. We don't take them for granted. They are great accomplishments & we are so pleased!!!
This coming Friday, we are taking Abi down to Primary Children's to have a 24 Hours EEG Test done. The reason why Abi is having this done is due to all the types of seizures she is having. Dr. L & I felt like it was the right thing to do, before we made another increase in her medication. Hopefully they will find what they are looking for and be able to fix or treat the seizures. Thank you everyone for your thoughtfulness & for your prayers. We couldn't thank you enough!

The Steed Family

Friday night, while we were at the fair, we ran into Dave's sister, Karen. She was holding Abi & the next thing we knew we lost them. When we found Karen, we didn't find Abi in her arms like before, but to the side of her was a man that neither Dave nor I recognized, & he was holding our Abi. Watching him with Abi was one of the sweetest moments I have ever seen. He was so gentle & so tender with her. Come to find out this man was Jardee Steed. His name you might not know, but his name... along with his sweet wife, Bobbie, are the names that we have learned about through Abi's "former" Physical Therapist. Jardee & Bobbie were blessed with a sweet & very special little boy named, Tagg. We learned about this family due to the same issues that Abi has been facing...seizures & developmental delays. Dave has talked to Bobbie on the phone concerning some past medications we were deciding on for Abi, & it was her that helped us make an important decision. Tagg not only suffers from seizures, but he also is delayed in his development, just like Abi! This little boy has what is called Heterotopia, <--(click to learn more) which makes him have seizures. My heart is so full with gratitude to this family! I have never in my life felt so close to someone as I do with this family! Abi meeting this family was priceless. She beamed! It was like she was reunited with some of her best friends. She was so happy & it didn't take any warming up for her to the Steeds. She was absolutely content with Jardee & Bobbie. Full of smiles & noises!!! We didn't get to meet Tagg Friday night. But Saturday, while I was there with the girls, Jardee, Bobbie, their girls, & Tagg were all there. I was so excited to FINALLY meet this sweet & handsome little boy! I immediately fell in love with him!!! He is absolutely adorable!!! I also was excited for Abi & Tagg to meet too! They were so cute with each other! They have some of the same similarities. The crooked smile, their eyes look the same, the way they move their hands, and so on. My heart is so full with love for my Heavenly Father & for him sending this sweet angel to our home! And also for us finally meeting the Steeds. These people will be forever friends, and hold a very special place in my heart.  I know Tagg & Abi don't have the same disorder, but there is a connection. I am so grateful for The Steeds! We are looking forward to getting together with them & getting to know their family even better!!! Thank you Karen for introducing us to the family we've been waiting to meet.

Jardee & Abi, Me & Tag

Grandpa Richards

I thought this picture was so stinkin' cute!

I Love You Papa Richards!

You mean the world to me!!! 

HaPPY 1st BiRTHDaY!

I cannot believe it's already been a year since our little Abigayle was born. What a year!!! I was pretty emotional the night before & day of Abi's birthday. I even set my alarm on my phone for 2:26 AM to wish Abi a Happy 1st Birthday! It has been a "bitter-sweet" experience for me & I am so grateful for Abigayle and all that she has brought into our lives in the past year. Yes, we have had a lot of challenges & experiences that I would wish that no one will ever have to experience as a parent with their child. But, we also have had a year that has been very rewarding and very humbling that I would never ask to be taken back. We are looking forward to many, Many, MANY more birthdays with her! Here are some fun pictures on her special day!

We Love You Abba-Dabba, & we are so proud of all that you have accomplished in your first year!

Haircutting Time!

BEFORE

AFTER

It was finally time to cut Abi's hair. This is not the first time I have cut her hair, but the THIRD time! When I cut it, I couldn't believe how curly her hair went. She has a bit of natural curl to it, but who knew this much!!!

The THREE Amigos!

BEST BUDS!!!
Abi, Emi, & Hunter

Abi Update

Just a quick update on Abi. She is doing FANTASTIC! We had a visit with her Neurologist last week & he couldn't stop telling us what an amazing little girl we have! She is doing incredibly well! She is vocalizing more. She says: "Dada" & "Hi", & also waves!!! She also is doing great developmentally. She regressed a little after I posted the videos of her saying Dada & rolling, but she is back to doing those things & also doing more. She is so vocal. She wakes us up very early in the morning by just jabbering away. I think she has found her voice!!! She also is scooting around on her back by pushing off with her feet. She went a whopping 5 days seizure FREE!!! But now is down to 1 every other day. Hopefully this last increase of her Vigabatrin will stop her seizures all together. She is doing well in her Physical Therapy & we couldn't thank the Up-To-3 Program enough. We also had a Swallow Study done to see if Abi is aspirating. The news: She's not!!!! Whew!!! She has a really bad case of acid reflux. But we're not out of the woods yet. We still need to watch her & if there are any suspicions of her aspirating, then to let them know. We go in for a follow up in 6 months.
We are so grateful for all the positive feedback we have received from the Doctors. I know that our prayers & your prayers have helped tremendously!!!

JuMPiNG

Photo and video editing at www.OneTrueMedia.com

Look what Abi is doing!

:Happening in June:

Abi cut 4 teeth at the beginning of the month. They all came in the first weekend in June. Her top front tooth came in, following with a bottom front tooth. And then the next day, another top front was in, along with the other bottom front. Now she is working on 2 more top teeth. Pretty soon she'll have a mouthful of TEETH!
We took Abi to see Dr. L, her Neurologist the second week in June. She wasn't supposed to have an appointment, but the first Sunday, Abi had a horrible day. She had had 6 seizures by 11 am that morning & then 1 later in the evening. This concerned Dave & I. Normally she was only having 2-3 a day. We got her into the Dr. that following Tuesday because she still wasn't doing any better. We had another EEG performed and Dr. L explained to us what was going on with our little Miss. The good news is her Infantile Spasms are under control. They didn't show up on the EEG. The Dr. believes that the Vigabatrin is doing its job, and that is what is controlling her Infantile Spams. We are so excited for this news! The bad news is that she is experiencing what is called Partial Complex Seizures. We knew that her 'spells' had changed and kind of felt like they were the seizures instead of the spasms. So he increased her dose on the Topamax & we hope that it will soon control her seizures. So far, it has helped, but she is still having about 1 or 2 a day.
As for her development, she is doing awesome!!! She started saying "Da-Da" on Fathers Day. It's the cutest thing ever!!! Along with her vocalizing more, she also has almost accomplished rolling. She can roll to her side, almost belly, but can't figure out to move her arm.
Her Physical Therapy is going well. She had PT a few weeks ago, and it was very informative. We got a new PT & she gave us some more exercises to do with her & stretches for her muscles. She is a little concerned that Abi might have what is called Torticollis <--click to read about). So we are doing stretches with her to get her neck muscles working properly. Also she thinks she is aspirating when she eats. We have to prop her up to where she is sitting fully up while feeding her a bottle and feeding her solids. Also we prop her while she sleeps. We will be having a Occupational Therapist come out to see her and evaluate her. Hopefully they'll help her with her feedings and figure out what we need to do so this no longer happens. She most likely will have a swallow test to see if she is for sure aspirating. It doesn't come as a surprise to us as I thought it would, & I think it's because these girls with Aicardi Syndrome are known for aspirating. We just want to get it under control so she doesn't get all that fluid in her lungs and cause her to get sick. That is one of the reasons her condition is fatal, because of the aspirating part. So we are doing all that we can do to help her to not choke while she eats or sleeps.
Abi is such a joy in our home. We are focusing more and more on the joys of Abi daily, instead of focusing on the uncertainty of tomorrow. We are living in the moment. Enjoying every day together. It's amazing to me how the little things I used to take for granted, before Abigayle, are now so precious to me! We KNOW the Lord is with us! We have been truly blessed by this sweet angel in our home. We feel our Saviors love all the time!!! I do not know where we would be if we didn't have the gospel in our lives. His love, along with everyone else has brought us so much peace and comfort! We feel your prayers. Thank you all for continuing to keep our little Abi in your prayers. She is a miracle!